I have Klinefelter's Syndrome and it did cause weak bones, weaker lungs like mild asthma, it cause no testosterone so have to take shots every two weeks, also had a brain tumor that really mess me up and almost killed me, and i also had hard time learning like speech and science.
Thanks for the informative video! We found out about KS during our fertility journey. As a form of therapy via vlogging, we have begun documenting our own battle with infertility and desire to have a biological child despite the KS diagnosis. We have noticed that KS looks different in people diagnosed and not every story/description is the same.
I have this. For the longest time I’ve struggled with body positivity until I started working out and hitting the gym vigorously. I recommend every man who finds it hard to look at themselves in the mirror to start picking up weights and get a gym membership!
The differences in the body are related to hormones. For someone that doesn't have optimal T levels it will be extremely hard to build muscle and change the body. It's better to remediate it first.
I'm 70 it was not easy for me to deal with, Testosterone just didn't work for me,I have a pretty severe version, all I could ever think was it could be worse, I'm glad most XXY men have normal lives mine was very hard,I could be the poster boy for it Mar
Hi I am a man or women at 69 I wasn't sure I had female feelings, I had breasts wide hips, I've also had blood clots & at 76 heart issues, growing up was a nightmare, I was sexual assault by 3 boys because a young looking face & breasts at 76 I still see every detail, I have also Asperger syndrome, at 65 I got married it was the greatest mistake of my life, this women sent me to hell I informed her about my 2 syndromes she said I probably enjoyed what they did to me, I told her that my mum was raped by my dad & then I was born, at 70 after loosing my family home & she got most of my money now homeless my 2 dogs kept me alive, but never give up I have a partner a X teacher who understands my problems, I hope boys & men who have xxy find happiness 😊
Check out videos by "Living with XXY", there's alot of information on that channel. I don't recommend their facebook group, as they aren't very tolerant of different opinions, and your inbox will get bombarded with abuse if you disagree.
Seems to me that since it's just a blood test to determine if the abnormality exists, it would be wise to just do a karotype test once before puberty so that as normal a development could occur to reduce future health issues. Seems like as soon as sex is involved, everyone looks the other way. Seems to me that our health systems have some questions to answer as this has been a known issue for quite some time.
I suspect my son may be affected. He is 12 next month. I am going to have him tested. It's scary, but I am glad I am aware. If he has it, I will press them to put him on T gel right away so he can have a more normal puberty.
@@sexyblackjag You are actually fucked. Stop doing this to intersex children! It's not right, it's so wrong, it's up to the child if they are going through puberty what type of puberty they want to go through. I have Klinfelter syndrome I don't mind it, I don't mind it bc I am transfem but many people who are cis don't mind it and that's fine. HRT esp masc HRT effects the entire body and is fairly permanent. Luckily if your child is 12 months it won't matter bc T and E levels don't change until after puberty. Pre puberty sex hormonal levels are nearly identical and are almost non-existent.
Yes, doing a karyotype at puberty sounds like a good idea. But if it comes back positive for XXY, it doesn't mean the child should be pressured into testosterone therapy. The intersex community has long been harmed by non-consensual treatments done to intersex children. The decision to start TRT should be left up to the kid upon entering puberty. In addition, the child's gender should be taken into account, as some XXY people do end up as trans women, in which case estrogen therapy would be the appropriate treatment instead of testosterone therapy.
@@emilysmith6897 some of us never experienced puberty. That is how mine was discovered back in 1984. I started taking testosterone at 14. I'm 53 now and I still take testosterone shots each week.
I'm Srijan, and I'm 22 years old. My journey has been challenging due to Klinefelter syndrome. In school, I was always shy and depressed, often lost in my thoughts with stories or images while class was in session. I struggled with math, and some seniors judged me because of my appearance-specifically my chest and lack of facial hair. When I joined college, my social anxiety worsened; everyone seemed older, and I felt isolated, facing harassment because of my looks and my chest. I believed my diet was the issue, but at 21, I learned that my appearance was due to Klinefelter syndrome. With my birthday approaching on September 25th, I find it hard to accept my situation after years of suffering. I know I can improve my appearance through testosterone replacement therapy, but I don't want to burden my family, especially since I feel I've already cost them too much. Finally I will take my life by jumping of train track let's God make your life good who is suffering from Klinefelter syndrome
There are many studies on Klinefelter's syndrome but I havent seen any book or even an article with practical teaching how to live and form close relationships ( or maybe even dating ) for people with said syndrome.
I’m a wife to someone with this, it is hard but my best suggestion would be that if she loves you, despite the low sex drive and the infertility, she will be willing to do whatever as long as you are there emotionally for her. Try not to get bitter or mean about talking about it, be her support system and if she loves you she will give it back ten fold. It falls apart if you don’t.
My doctor brought this up today I'm gonna have a thyroid blood test on thursday, I hope they check for KS too. I've noticed quite a few of these things growing up and I'm kinda anxious about it. Thanks for the video!
I was diagnosed with this at 27, after trying for kids for a number of years and extensive tests. Im 67 now. Back then, there were no extra's to help, fertility wise. Apart from being a Jaffa (seedless), the on;y other big issue i have had, is teeth. From the very very young age,. massive issues and many time, pain and infections, no matter what. Happy they are mostly all gone now
Hi had this since I was young now got to the age of 37 my hips gone sore been back to my gp waiting to see some at the hospital but covic 19 has stop me having appointments seeing a doctor about my problem
My partner of 23 years has KS and cannot father children, is totally impotent 15 years now and at 61 I feel deteriorating mentally. Chronic ADHD, mood swings, frustration, loss of memory and general decline. The sustanon he is injected with assists to a large degree but are there other medications he should be taking for the other symptoms? As the primary partner I have often been lonely, isolated and worried and even grew irritated and agitated by his often negative and moody behavior and largely his social inadequacy. The thing is that I am all he has in life and it’s left up to me to be the caregiver.
@Graeme Tucker thank you so much for your information. I am going to get some feedback from the doctor to start taking some. It’s really difficult here in SA because doctors are not too clued up all over about KS It’s really frustrating
Well it's not an "infection", it's a condition from a chromosome abnormality in the embryo. I suppose the first step is to stop considering it as a disease. It's quite likely that treatments such as testosterone treatments would be best done during childhood and puberty which makes it surprising that a blood karotype test isn't done at least once during childhood. Obviously possible consequences such as type 2 diabetes and heart issues can cost our health system quite a bit later in life so even with just a 1 in 600 occurrence, it would be best to address the issues early and as many cases are not diagnosed, the occurence is probably much higher. A simple childhood blood test could save society billions.
Thanks had this since I was youngest now 37 got sore joints don't really get on with people very slow on learning .not very good at reading. Have problem getting my head around things
I have Klinefelter, I don't have any chest hair, I have feminine waist, I have small breasts, they don't bother me personally in fact I kinda like them (I am medically on feminizing HRT, I am trans). I never undressed in the locker-room bc my chest is super weird.
Same(too dumb I change my name ) Honestly I don't really need testosterone blockers, and having wider hips really balanced out the broader shoulders lol
@@maxh4175 well you can understand it however you went, if you say 46XY then you mention the numbers of all the chromosomes while specializing the last pair as XY.. But if u say 44XY then you mention the number of the first 44 chromosomes then the last two as XY so both could work i think
A 45 chromosome is Turner’s syndrome where girls have one X and is shorter, 47 chromeosome is Klinefelter where a boy has one extra copy of X which means they had female features and taller than boys with one copy of X
we don't have female features. our bodies may appear more feminine and the low testosterone levels can cause breast enlargement. But we don't have female "parts".
Really, asking for medical advise over the internet... The only valid advise would be to discuss it with your doctor. As it only takes a karotype blood test once in your life to find out, it may be worth it to have the test. As to treatment, other than treating the health problems that may arise as they occur, it would probably just be hormone treatments to have as normal a development as possible which of course would be most effective during childhood and puberty (though there may still be some benefits later in life).
I have this as well as many men in this comment section I served in the marine corps and army for a total of 8 years and no matter what I could never understand why I couldn’t keep up with pt not that I was bad but I had to really out in the work and after my enlistment I couldn’t do much more and I got my testosterone levels checked and lead to many other test and it’s not been 3 years since being out and test levels are pretty normal now been doing wildland firefighting for twos year now like everyone has said go get checked if you think there’s anything wrong or out of the normal
Because Klinefelter syndrome is from having a second X like females, does having it (and low testosterone) prevent any man's voice from becoming that of a man and make him sound like a woman or child regardless of age?
I think my older brother has this. It's very similar to his body shape, behavior and medical cronology as well. Besides, he is very infantile and childing at his age(2002 y) For example, one day, me and my family found out that he has loan over 1,000 dollar(US) on 300% program. He had no job tho, so he had no money to pay it all. That day the whole family including my auntie was arguing. And I said that I'm ashamed for being his sister. The he went like "You dont love me anymore? ", " I thought we were friends" the whore freaking week. " But even if I'm mad at him, I feel pity for him, when I think that he might have health, physical, psycological or endocrinical problems.
Seems to me that there is a wide variation of the symptoms so just one contradiction isn't conclusive. Given the possible future health issues and how there are treatments, it might be best to just see if a karotype blood test would be covered by insurance, it would just be one test for life.
Can you be XXY and have gone though male puberty as normal? I ask because I was born male, never had any muscle strength, genitals never changed from before puberty to afterwards but grew facial and body hair as normal and had moobs from the age of 8 due to being overweight.
I didn’t go through puberty till 16 I picked up the quiet personality because my voice still till this day hasn’t gotten any deeper so I speak quietly because I have been bullied about the way I am and the way I speak that I feel embarrassed to be myself around others especially my own family but since I’m on testosterone treatment I still feel a bit of sadness because I know that even though I’m 26 I can’t be my wife’s sperm donor and she understands because she’s having infertility problems too so our best option right now is to adopt a baby or toddler and go from there
Hi dear I am 32 years old and I have been diagnosed KS unfortunately. Now I am on T treatment but I can't say it to my wife... I know I sucks Is there any idea 💡 how I should say it or 😢 to my wife I love her so much so dose she. All day and night almost I myself stacked in thinking about our lives But no solution in my mind. If any body can help please let me know Any ideas or such experiences
@@zabiullahakbari3764 so sad to know about but it is what it is. I am also 21 years and i am 99% sure i have same syndrome. I have no idea on how can i tell my parents about this.
@@crazyicecream2237 Stfu dude. Subliminals are stupid pseudo-scientific frequency based wishful thinking. Those frequencies doesn't change your cromossomes, neither does the universe. Just helping you free yourself from witchcrafty quackery cuz I believed that shit in the past. God bless ya! ❤
Out of all the symptoms I searched, I could see just one in me, that is wide hips, Does that mean I have ks? I'm almost 18, normal heightened guy(5'10"),have full grown mustache but I haven't grown a proper beard by now. Pls someone tell I'm really concerned now about this
Just cause you have 1 symptom of something doesn't mean you have it mate. Internet is a dangerous place for people worried about themselves. You're only 18. Many 18 year olds and even 30 year olds can't grow a proper beard.
If you dont have a difficulty growing muscle, have narrow shoulders or larger fat gain around breasts or stomach, Its not likely you have it, however if symptoms progress of you continue being concerned, it is worth getting a check up or examination.
@@Yes-fn2yj Exactly brother, but I don't know what's wrong with me these days, I even went to consult a doctor and he said I am completely fine, my hips aren't wide it's just all fat, but even after getting consulted by a doctor, my stupid brain still won't get satisfied, it always tells me to get a test The worst part is I have an exam that will decide my university in 20days, it's super important but now I can't focus much on studies because of this stupid assumptions I made about my self, I'm so helpless😭😭😭😭
Do you automatically have small testicules ? I have. a few symptoms and i was worried so i mesured my testicules and they are above average. My penis is normal size and im hairy also. Could i still have this even with lot’s of hair and normal size genitals ?
U will be tired and its harder to concentrate.Loose muscle mass,thats about it.I stoped taking shots 4 years ago and now snd then take a bt of gel for a week or two.
Who of you actually has Klinefelter and is experiencing it through life? There is a huge difference beetween medical studies and a self experience. To all u doctors,you might just be really wrong...
I’m confused why in google they say something different from this Vedio, they said that people that have this syndrome can have Spectrum disorder autism is that true or ? I’m confused
Yes its true and also ADHD and more easy to get a depression or worse. Im in a clinic right now, because i have klinefelter, adhd, depression for more then 10 years and more mental stuff. So the video is not complete
Do You Have Gyno (Male Boob's) and Wider waist and Wider Thies also like Most Girls?? Because I Have all That My Body Looks like Girls But I don't Have Speaking Reading and Memory Problems as they are Mentioned in Video So Am I Also Suffering from Klinefelter Syndrome??
Klinefelter syndrome can actually make you taller because you don't have enough testosterone to make your bones fuse and stop growing. You can also have a testosterone deficiency without having Klinefelter. If you're worried about it then you should get tested
Thats why i could not understand im reading books, its hard for me to memorize.. every time i buy new gudgets I dont read the manuals. Im good discovering new things. I can figure it out without reading. Listening in Class is my Problem, one of The Teacher put my report card when i was in Grade Schools. Physically Present Mentaly Absent. Xxy is not an easy my medication are not covered by my health insurance i use to take one month supply for Androgel an getting bankrupt. Now taking the cheapest i got my T- Injection every two weeks for a nurse visits. I want to be Normal in this World there are a lot of Judgemental People especially in the Social Media.
Maybe try to find a different insurance company that would cover the treatments. Granted most of us get our group insurance through our employer but maybe you could discuss that with your HR department, they might even contribute part of the costs if you strike out on your own for coverage, larger companies often give you a choice of coverages too, albeit at greater costs to you. Even coverage from government social benefits can vary, after years of going to the cheapest insulin available due to coverage, my doctor now believes I can go to more advance insulins now that I'm considered severely handicapped, that may also be why my cardiologist managed to get some medicines that costs thousands to be approved, I supposed that and trying to keep me out of the hospitals as often as I have been as that surely costs more. If you are hospitalized, you get to speak with a social worker that can help you sort things out (well one visited me at my bedside on my second hospitalization or rather fourth as there was two other hospitalizations in two different countries), trying to talk to a government social worker directly is a whole day affair where you show up at the service centre as soon as they open and get an appointment later in the day.
Depends on where you live and what testosterone you go on. In Australia my T is like $6 every 3 months so very cheap but I also got gynecomastia surgery which was thousands of dollars but atleast I'll never have to pay for that again
@@ohboy111 Do not know whether you have a handle of the Kinferter hand in this or not but I am deprived and sought suicide ideas .....that's all I have
Instead of making an end card you could have mentioned in the beginning that people with Klinefelter Syndrome don‘t always identify as male. They are intersex after all.
Most people with Kleinfelter Syndrome are not transgender. This is rather an intersex condition. It seems most diagnosed with this syndrome take testosterone to enhance their masculine features.
WTH?? How can you be watching a video about chromosomal disorders, while at the same time think that biology is black and white? You really need to learn the simple differences in transgender neurology.